News — September 23, 2014 20:38

Showing Support For James Toohey

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We are asking fellow Reds to show their support and take a few minutes to read this heartbreaking story of James Toohey, who is 3 years old and suffers from a rare brain disease called Late Infantile Batten Disease.

As there is not yet a cure for this disease, every moment with him is very precious to his family. One of the first symptoms of Batten’s disease is that James will lose his sight. We literally have a race against time to help James before he loses his sight.


A fatal disease that would over time cause James to suffer mental impairment, worsening seizures and progressive loss of both his sight and motor skills. As well as this James may have difficulties sleeping and become distressed for no apparent reason.

He will lose his ability to sit and hold his head and will eventually need to be tube fed. Chest infections will become frequent as James’ immune system fails and suctioning will be required to maintain his airways. Eventually James will become blind, bedridden and demented. The disease is always fatal, with death usually happening between the ages of five and twelve.

A fundraising  page has been set up to help pay for special needs/sensory toys to help James maintain and develop new skills, physiotherapy to support James keeping mobile and active for as long as possible and any medical equipment he will need in his battle against Battens. There are plans to send James on the holiday of a lifetime while he can still enjoy one.

James will also support the BDFA who fund research into Battens disease and help other families affected by this heartbreaking disease. James has been accepted onto a clinical trial that is being conducted at Great Ormond Street Hospital in late October. The trial will last a year and is being undertaken to examine whether a new experimental drug is safe for children and to assess if it can alter the progression of the disease. The trial offers a small glimmer of hope where absolutely none existed.

You can donate via the special just giving page which has been set up for James.

Alternatively please contact Mike Lepic at the 23 Foundation:

You will be able to donate by paypal, bank transfer or by cheque.

We hope you will be able to show support for James.



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